9/20/13

You bring yourself with you

For the fourth time, I am re-reading Neil Gaiman's The Graveyard Book. There are two fictitious characters from whom I draw some parenting cues: Albus Dumbledore and Silas in The Graveyard Book. When I actually think about this, the fact that I don't draw parental inspiration from, I don't know, parenting books or websites or whatever, I wonder if there is reason to worry. A wizard and a vampire. Mmm. My kids might be strange, but definitely readers :)!
Anyway, I was listening to the audiobook of TGB at the hospital, holding the sweet sleeping babe on my chest. When Silas was explaining why those who have committed suicide do not truly escape their problems once they have left this existence, he said to Bod: "Wherever you go, you bring yourself with you."

This struck a chord, because its my problem now. There's no way around it, and no mincing words: I am pretty damn depressed. Spent a long time talking to the excellent surgeon who will eventually perform surgery to repair Eloise's long gap esophogeal atresia. Every single surgical repair option has pretty bad side effects. There are issues Eloise will cope with her whole life no matter how we fix it, all of it related to eating. Throwing up, aspiration, oral aversion, choking, maintenance surgeries once a month for years on end.
Because babies with EA have never swallowed anything and had that something land in their stomach, the first time it happens their body has a noxious reaction. Their body feels like its suffocating and sends alarms off all over. So it will take possibly years to get her to feed orally. This is not the worst thing in the world, I have the patience for it, but I am overwhelmed at the amount of work this will take.
I am disappointed with the timeline my surgeon set forth. It is clearly the best plan, but at best, Eloise will be spending at least 5 or 6 months hospitalized. Her medical bills have gone well past $100,000 already. Our insurance is pretty good, but doesn't cover everything. We've have quite a bit to pay for (way more than we budgeted for when we got pregnant, anyway).
We are applying for institutional Medicaid. I really can't tell you how depressed I get filling out Medicaid applications and interviewing with social workers for it. The system assumes you're trying to cheat, and it makes me feel like a criminal every time. And it takes time. A lot of it. I've spent a couple hours everyday haggling with insurance, Medicaid and billing offices.

Oh, and have I mentioned that every single night in the past week Amelia has wept, because "I want Eloise to come home! I want our baby! She needs to be here! Elooooooooise!" There's no comfort I can give her, because there is not much to give. "She'll be home someday" doesn't make sense to her. It doesn't make sense to me, for goodness sake.

I've made a list of things that help, and things that don't.
Things that help:

  • Holding Eloise when she is awake and alert and happy
  • Singing along with my 'angry' music loudly with the car windows down, as I'm driving to and from the hospital.
  • Eating delicious pastries. Guru's Enlightened Cafe, holy cow, their almond croissants? Stuff 'o dreams.
  • Buying things for Eloise like toys, new clothes, special baby soaps, home-y accents for her baby prison hospital space.
  • Shopping at Target
  • Sewing. I hardly have time for it though - my last project took a cumulative hour, but four days to finish.
  • Having fun with Jo, Millie and Hazel
  • Awesome nurses, and kind doctors
Things that make it worse:
  • Trying to plan for anything further than two days in the future
  • Listening to other baby's problems in the NICU
  • Women who wear too much perfume in the hospital elevators
  • Meal planning and meal preparation. Dishes, though, is a pretty therapeutic activity
  • When Amelia cries over Eloise. Sucks the life outta me. 
  • Money stress
  • When Eloise gets her panicky look in her eyes because she is full of sucretions, and can't breathe.
Most of the 'worst' list are unavoidable. But hey, I can at least identify what is making things harder. I think we'll make it through all this, but right now, I'm going to go ahead and be depressed.

2 comments:

  1. I love how you record things that work for you. And I especially love the kinds of things they are.

    "The system assumes you're trying to cheat, and it makes me feel like a criminal every time." I can't tell you how ANGRY this makes me on your behalf. If it helps at all, please know that my family accessed the same kind of coverage when my penniless brother came home from Africa to help cover the crazy bills for medical testing and his stay in the ICU. This kind of thing is one of the reasons the system exists!

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  2. You inspire, Shelley.

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